I have heard thy prayer, I have seen thy tears, behold I will heal thee.
2Kings 20:5

Sunday, May 18, 2014

Excercise: Cystic Fibrosis & Transplant

I have a workout blog...which I tend to neglect :(  however I would like to blog today about fitness and how important I feel it is especially post transplant. 

Before my transplant I was always VERY excercise concieous...in high school I took a physical ed credit EVERY semester (not kidding) I took aerobic classes, weight classes, aquatics and overall general PE classes. I credit my drive to stay in shape and workout to a fellow CYSTER Frannie Baumgartner- she holds track records at my high school & state weight lifting records. She was a marathon runner & she took caring for her health/CF seriously. I looked up to her ambitions and her dedication with much admiration. I however never set any records, but I felt her influence helped me find the drive to reach my on personal goals.  I worked hard to maintain a healthy weight for my height. I maintained a weight of 95-98 lbs (I'm 4"11) and I did that with muscle building & eating a crap load of calories...not just junk food. I drank boost plus for extra calories if/when I needed them.

When I was 18 I became a Red Cross certified swim instructor in which I taught swim lessons for about a year. I had learned to enjoy working out at the gym and found satisfaction in running. I used to believe one could "out excercise CF" and by that I mean I had bought into the lie that if I exercised enough I would beat CF...

I believed that notion so much that when I heard of other cf patients becoming too sick to do simple daily activities I judged them a little in my head...'well if they had only tried harder' & I reassured myself that I would not be in that situation because I WAS SO ACTIVE. That is the lie I allowed myself to believe...I'm not saying excercise didn't add quantity and definitely quality of life for me, but in my naive thinking I thought I was surely saved from the damage CF was doing to my body. 

Cystic Fibrosis is a disease. The lungs of a person with CF are diseased. That disease will continue to damage the organ and tissue....that is the nature of the disease. That being said, I believe that healthy and proactive decisions I made were an excellent tool I had control over to help me combat the effects and progressiveness of Cystic Fibrosis. I'm an optimistic person...and now post transplant I feel I'm not only optimistic but also realistic.  That's is why I use the word "lie" when decribing the term/belief that excercise will allow me to beat CF. I lied to myself for years & I'm glad I did. I feel like in order to deal with a disease like CF I needed a healthy level of denial...it was my coping mechanism. 

Speaking of healthy level of denial...there is a fine line. I was in denial for far too long. When I had to face the fact that I was dying & I only had less than a year...I stayed in my bubble of denial. I pushed my body beyond what it should have been capable to handle. When I finally accepted that I couldn't "excercise more & get my lungs healthy again" I had to face reality that Cystic Fibrosis had destroyed my lung tissue and it was not going to heal. By that time I was just months away from my last breath. When my lung functions were topping out at only 15% FEV1 I could no longer deny what CF had done. When I had to depend on oxygen supplement 24/7...I could not live in denial anymore. 

I didn't become broken or discouraged...I call it denial but I also think of it as my hope. I had hope & I NEVER lost that. I had a gym membership at Golds Gym even when I was packing around oxygen. I walked the treadmill with my O2 slung over my shoulder...I walked to keep my body as strong as possible. I knew I would need it if I wanted any chance of a lung transplant. 

It paid off...when I finally made it to my transplant center for my evaluation...I learned I only had 11% FEV1 I was on the max amount of portable oxygen. The pulmonary specialist performing my PFT's was surprised I was even walking...let alone able to pass the 6 minute walk comfortably. Staying active truly gave me the physical strength I needed. I was put on a ventilator just days afterwards...my lungs just could not function correctly any longer. I was listed the day I was put on the vent & 3 days later received new lungs. 

Because I lived and experiences the positive effects on my health that exercise had on my life pre transplant...I've continued and I take it just as serious if not more...

I'm almost 6 years 6 months post transplant & I have not experienced rejection since my release from the hospital after my recovery...my lung functions have been stable at 88%-95% FEV1 and I maintain a weight of 107lbs effortlessly. I don't believe I'm doing so well post transplant because of the things I do. I believe my life/health is a blessing from GOD & I believe I'm very blessed. I also believe that we are responsible to do our part. So I do. I take my meds faithfully, I excercise regularly and I track my health very closely...all which contribute to my lungs staying healthy. 

To sum up my thoughts...I believe excercise is a very important part of the treatment/management of CF & post transplant life. Be proactive...live in a healthy level of denial(hope) and don't underestimate the capabilities CF has to kick our butts despite our hard work. You're adding quality & quanity and never forget that...just remember what CF is. I felt like I had "failed" when I had to surrender to CF, in reality I had given myself an unknown amount of more time and life that I would not have had otherwise...with Cystic Fibrosis there is never failure & I had put such high expectations on myself that It caused me to feel like a failure, I have changed my perspective now...a lot. My high expectations only forced me to reach farther, work harder and live longer than I would have if I had not set them, but I now know I didn't fail anyone especially myself ;) CF isn't my "enemy" it's my partner in life and together we'll be the best ME I can be :) 



1 comment:

Anonymous said...

6 years, 6 months - keep on truckin'! You are beautiful.

Where to start to learn about my transplant!

Thank You for taking the time to read my blog. I am hoping that through this blog and my experiences that I can bring hope, faith and strength to all that may be living with Cystic Fibrosis, CF with Cepacia and Lung Transplant recipients. Information and blog entrees start Nov. 07. My Double Lung Transplant was on Dec. 10th 2007. Please feel free to read about my experience and ask me any questions! My email address is jamiebug77@gmail.com

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My Testimony

It's hard to put into words how I feel toward my Heavenly Father and the Savior. I have so many reasons to be thankful for what I have gone through & endured. Because of my trials in life I have gained a strong testimony of Faith. I have always had Faith in the Lord and in Prayer. As I faced the decision to get a double lung transplant I had to rely on faith to make the choice.....By listening to the spirit, I was guided to Pittsburgh where my life was saved. I believe prayers are answered. I have always tried to follow the philosophy of this: If I do what the Lord expects of me, he will give me what I want & need. That has always worked for me. I Believe in MIRACLES..........My life on this earth is a miracle- I prayed on my knees for years to be healed from my lung disease. I knew that through a priesthood blessing (if it was God's will) I could be healed. So many times I thought he would heal me instantly...my faith was tested as I continued to get sick and no cure was in my future. I turned to prayer....I talked to my Heavenly Father, I cried to him and he heard me and he healed me by guiding me to Pittsburgh and guiding the surgeons hands. I learned humility, and thankfulness. I realized that we need others to lean on and we are supposed to strengthen each others testimonies. I learned that the hardest things we'll do are usually the greatest blessings in our life. I was able to experience a lot of things during surgery and I know I had comforting angels in my ICU room. THe Lord knows each of us by name and he will never leave our side. We need to remember to stay close to him and have Faith that he is watching over us. I know this for a fact! I know that following the gospel will bring us true happiness- the world will tell us otherwise, but I know I am truely happy & living the gospel has brought me that. Amen